Macmillan Community Palliative Care CNS Alison Faulkner-Butcher finds working with users can be a rewarding experience.

We invited all service users and carers to comment on and discuss what the team was doing well and what improvements were needed. A series of workshops helped form a plan to improve service quality through a number of collaborative initiatives.

We set up a chaired partnership group to represent and improve the experiences of users, drawing on the support and expertise from established national user groups.

The Palliative Care Partnership group now includes nine carers; four users; Diane Clothier, a chairperson who has experience as a carer; with professional facilitation from the SPCT.

The group has achieved several service improvement measures to date, including:

- developing a booklet for users with sources of information and support

- setting up an information website about the group

- holding quarterly planning meetings

- holding local events to illustrate the impact of user involvement and to strengthen the scope and diversity of the group

- conducting a user/carer experience survey to help prioritise the group’s work

- improving out-of-hours communication

- improving advanced care planning communication.

Recently, over 100 current users were invited to attend a poster presentation of the group’s work to date. The event was well-attended and encouraged feedback and evaluation of current service provision. It has also helped the group focus on what current users needs are.

The strongest themes to emerge from users were:

- the need for better out-of-hours advice and support for those in palliative care

- the need for a key worker

- improving communication between specialist departments, community services and the hospital

- more carer support around practical caring issues and training.

Since the event, we have worked with the hospital’s fast response team (nurses, therapists and healthcare assistants) to provide an out-of-hours support service to people with palliative care needs on the team’s current case load. Forty patients and carers were assisted in the first month, and we expect many more to benefit from this initiative.

Diane Clothier says, ‘This is an excellent example of how partnership working between professionals, users and carers is helping to identify what is important to patients and carers.’

The rewards of partnership working have been rich in terms of driving quality improvement. It’s been a truly enlightening experience for all involved because of the depth and authenticity of user feedback, and the positive impact on palliative care provision locally.

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Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). A company limited by guarantee, registered in England and Wales company number 2400969. Isle of Man company number 4694F. Registered office: 89 Albert Embankment, London SE1 7UQ.